My Endometriosis UK story

This is a break from my usual letter posts to Cath so that you can take a gander at some professional photos of my mug and learn some more about endometriosis!!! (Discussing chronic disease is proven to be more fun with exclamation points!!!)

Long-time readers know that I have endometriosis and this year has been a challenging one. I’ve been in the hospital twice in the span of eight months. The first stay was an emergency where I was in a lot of pain and still suffer from flash-backs from such a scary and bewildering time.

Having a chronic illness is an immense challenge for so many reasons: the pain, the isolation, the fear, the frustration, a sense of being trapped by your own body. Part of the frustration and fear of having endometriosis specifically is that so little is known about it. Nearly every doctors visit I have, I feel so frustrated and scared because I know more about my endo than they do.

So that’s why you will see me blab about it as often as possible here on AsianCajuns. The more people (doctors and lay people, alike) know about the disease, the better. More knowledge means fewer misdiagnoses and less stigma against talking about women’s health.

This winter I got to work with amazingly talented photographer Holly Wren who is volunteering her time for Endometriosis UK; taking photos of women around the UK who suffer from endometriosis. Endometriosis UK then share our stories and portraits on their site. You can read my surgery story here.

I’m also hopeful that my story will help women suffering with endo and looking for answers like I was. Because doctors visits were so frustrating, I turned to the internet to read about what other women were dealing with, and it was immense comfort to read their stories and know that I wasn’t alone.

For those of you who would like to know more about endo in general, you can read a quick blurb about what endometriosis is here. And if you’d like to read more about my personal journey with endo you can click “Endometriosis” in our blog categories in the right-hand column or click here.

Thank you, readers, for listening to all this. I know talking about chronic pain is not nearly as much fun as Scottish castles or sustainable style, but it means so much to me to get to share this with you.

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12 thoughts on “My Endometriosis UK story”

I’m still so proud and in awe of how you’ve handled everything. It’s odd how I feel like I know you so well since you’re my twin and bestie, but I also still can’t fully relate to everything you’ve been through in the past year. Living closer together wouldn’t change that – even though it would have made some things so much easier! Still, it just feels weird not to know EXACTLY what you were feeling emotionally.

I’m so glad you’re using our blog to help increase awareness about endometriosis. It’s amazing how many women I’ve talked to have experienced it/have it to some extent. And it’s insane how little is know about it. If men suffered from it, we’d have a cure in pill form that you could get in an ATM! But don’t get me started on that 🙂

These photos of you are sooooooo beautiful. I especially love the last two inside your house – heehee 😉

You are soooo sweet! It’s funny I was thinking the same thing (not knowing exactly what you are going through) re the house buying/searching process. And I feel I should be nearer to you even if I still couldn’t do much. It is these big moments that I think, how can I be so far away from Cath. We really are being forced to hone our telepathic skills

Yes, isn’t my house lovely? I’m getting a bust of Matt done to go on the walls — those guys don’t have enough curl in the stashes or glass on their noses. Ha!

Lar-
Thank you so very much for continuing to share your battle with endo! Reading this and your story on the UK site just made me tear up. I know that pain and frustration you’re going through.and I’m so very, very, very proud of you for being strong enough and brave enough to share this!
xoxoxo

Oh man, Lar! I just read your story on the UK site. Good for you for insisting on getting the ultrasound, but I feel awful for you that the scan wasn’t scheduled sooner. I hate to be all “things happen for a reason” because I can’t even imagine what it was like for you in the hospital and post-surgery, but thank you so much for sharing your story with us. It is so important for us to be in tune with our bodies, I mean really know our bodies and listen. My sister went in to urgent care with some neck pain and they were ready to dismiss her because of a previous neck injury years prior, but she insisted that it was a different kind of pain in a different place. She drove herself to the emergency room and it turns out she had a ruptured aneurysm! Crazy!

That is completely crazy, Amanda! I’m so, so glad your sister was persistent. It does seem so strange that patients’ fears are often discounted as just that, fears, when I think we know our own bodies better than anyone. It’s been such a frustrating process.

I’m so sorry you’re going through this. And thinking about Amanda’s response to this post and your reply, I don’t think frustrated is strong enough for what I feel about it.

Lately I’ve been thinking about this: When I had kids, I was pleasantly surprised when their pediatricians actually listened to me. Essentially I was told, “You know them best, you know their behaviors, you know when something isn’t quite right, yada, yada.” Yes! Half the battle–donezo.

However, that I was surprised by this gave me pause. It should be the norm, but I’ve found it isn’t, and never really was, the case when it came to doctors and my own health.quite the opposite. Instead, it seems that what is normal for me is irrelevant, and what’s worse, to me, is that it’s attributed to some nebulous, abstract changes in lifestyle (a lot of which I magically seem to be completely unaware of–stress, poorer eating, whatever).

I think this is very common when it comes to women’s health.

So I doubly (triply, quadruply [if that’s a legit word]) admire you for your persistence, your self-advocacy, and for talking about your illness. Keep doing what you’re doing–it’s really important.

Who We Are

We are Cath and Lar, two identical twins living in Atlanta and Seattle. We aren’t minimalist, but we do want to learn to live with less stuff. For the past five years, we’ve been whittling down the amount of things we own, and as we continue on this journey, we’d love for you to join us!